Autistic Writer/Blogger/Activist Amanda Baggs Facing Life-Threatening Discrimination in Vermont Hospital

Amanda Baggs, autism, medical bigotry, medical discrimination, medical killings, Our News & Commentary Blog, vermont

Amanda Bagg’s name and work should be familiar to a lot of people in the disability community.  A lot of people might remember reading her blog essay “If I am killed” on our old site, where it was reproduced with permission – and will be  put up again in the near future.  Many more will remember seeing her youtube video “In My Language.”

Amanda Baggs is an autistic woman who writes brilliantly, doesn’t use speech as her primary mode of communication and also lives with a variety of conditions, one of which has become quite serious in terms of being life-threatening.  Her friend Laura T, aka “webmuskie” around the internet, wrote us that after the last of several bouts with aspiration pneumonia, Amanda had been admitted to the hospital to treat the effects of the gastroparesis that was at the root of the problem.  The understanding going in was that this would involve the placement of a feeding tube, which would help her increase her food intake and lower the risk of aspiration.

I’ll excerpt some of the info from Amanda and webmuskie’s tumblrs, but I first want to share this excellent summary of the situation from Rachel Cohen-Rottenberg:

There is a very bad situation going on with disability rights activist Amanda Baggs (who is also my friend and colleague).

Here’s the rundown: A med student tried to argue her out of having a life-saving procedure — the insertion of G-J tube. A nurse laughed when she said that she wanted everything done to save her life. The hospital nearly didn’t admit her at all because they alleged she required a 24/7 aide. The message is very clear: Your life isn’t worth the life of an able-bodied person.

Amanda’s latest update is that, after her DPA advocated fiercely on her behalf, the hospital has changed course and is now taking about inserting the feeding tube.

http://youneedacat.tumblr.com/post/46772164821/so-i-get-woken-up-at-seven-someting-innthenmorning (Amanda’s tumblr blog)

Same place but turned out that was a program designed to limit employee web surfing that ended up on the wrong wifi. But this place sucks. Most hospitals do. Understaffed even when there’s good people. Messed up. Too sick to explain this moment. But culture of death here? Disability hate? Yes. This is the same place that tried to refuse me entry because I didn’t have a 24-hour staffer willing to stay with me from my DD services agency. That says it all. And they think its better sometimes when ppl die. Healthcare professionals don’t admit their bias but they’ve found they think our quality of life is terrible at the same Time we think ours is fine. It influences them. This is why I got into disability activism. I somehow never thought it would be me again, in the position of being treated as better to let me keep aspirating than try a G-J feeding tube.

They’ve talked to me what a huge choice it is. I made the choice easily months ago. They been talking feeding tubes since I was first diagnosed. No surprise here. They tell me it might not work. They tell me consider alternatives. The alternative right now is pneumonia and death. They tell me all this bullshit. Underneath the bullshit is ideas they aren’t willing to admit they have.

Ideas like: No quality of life. Better off dead. Let things take their course. No matter what we do she’ll get sicker and sicker and die. So might as well do nothing. Pretend it’s not happening. Pretend the ground glass appearance of my cat scan is just a sensation I imagined. Pretend pretend pretend.

For the moment, it seems like the medical staff is laying off the “you’re better off dead” pressure.  For the moment.  You can read it in this blog post:

http://youneedacat.tumblr.com/post/46778111359/now-suddenly-theyre-being-nice-and-making-sense

Amanda also posted her own account of her hospital stay last night.  You can find it here:

http://youneedacat.tumblr.com/post/46816346769/the-weirdness-of-being-told-that-the-death-alternative

So – in the meantime what has been done and what can be done?

First – the following from Webmuskie has been shared widely (hospital contact info):

It may be time to add angry phone calls to the hospital to the prayers come Monday morning. (the switchboard # is 802-847-0000 FYI, though you won’t be able to find her in the directory for reasons of privacy. Not a problem because come Monday the hospital administration will surely know who we are).

As a result of that info, countless people have called.  ASAN President Ari Ne’eman was one of those callers, communicating ASAN’s concern for Amanda’s welfare and that they would be tracking her case very closely.  So please feel free to use that phone number and register your concern, along with countless other disability activists.

In the meantime, NDY’s Diane Coleman has written to allies at Disability Rights Vermont (the Vermont Protection and Advocacy agency) and at the Vermont CIL.  It now being Monday, we’ll try to follow up to see what else can be done at a local level.

In short, just because the pressure to refuse a feeding tube (and die) has eased for the moment is no reason to let up.  It’s probable that the pressure brought to bear by grassroots activists over the weekend had quite a lot to do with the respite Amanda is experiencing now.

While we received alerts from many people about Amanda’s situation, I’d like to thank Webmuskie, Kassiane, and FridaWrites for the information we happened to get first.  And also to Rachel Cohen-Rottenberg for providing that excellent summary.  Most of all, of course, I want to thank them – and others – for getting grassroots activism and outrage going over the weekend.  I am very sure it made a difference and hope that all of our continued activism can turn this situation around permanently.

Brazilian Authorities Arrest Doctor and Seven Other Health Care Professionals on Charges of Killing Patients

Brazil, crime and punishment, medical killings, murder, Our News & Commentary Blog, serial killers

Thanks to Joe Stramondo, who found this article and alerted me to it.  (Joe is a PhD candidate in the Department of Philosophy at Michigan State University where he is specializing in bioethics, disability studies, and moral psychology. He has presented at meetings of the Society for Disability Studies, the American Society for Bioethics and the Humanities, and the Central Division of the American Philosophical Association.  He has published in the International Journal of Feminist Approaches to Bioethics and Social Philosophy Today. Finally, he has been active in the disability movement through ADAPT, Little People of America, the Connecticut State Independent Living Council, and, most recently, his employment with Disability Rights Texas.)

Right now, there’s not nearly enough detail on this case to get a real idea of just what we’re looking at – or the scope of it.  The initial charges and info are alarming enough, though.  Here are some excerpts from CNN’s story “Brazilian doctor killed 7 patients to free up hospital beds, police say“:

A Brazilian doctor appeared in court for allegedly killing seven patients to free up hospital beds in the southeast city of Curitiba.

Virginia Helena Soares de Souza recruited a group of doctors to help administer lethal doses of anesthetics, sedatives and painkillers, according to authorities.

In addition, the group allegedly altered oxygen levels for patients, leading to deaths by asphyxiation, police said.

Seven other health care professionals have been charged in the case.

There is an active and serious investigation going on, with some news stories claiming the body count could total 300 or more.  Back to the CNN story:

Her lawyer, Elias Mattar Assad, said she will prove that her orders in the ICU were backed and justified by medical literature. Lobato, however, said some of the patients were awake and conscious moments before the drugs were administered.

Meghan Schrader, a disability activist who has given several papers at the Society of Disability Studies and have a forthcoming article on intersections between ableist stereotypes, eugenic ideas and film music in the 1950s.  In an online exchange on Facebook, she said she was bothered by the sentence above, stressing that patients “were awake and conscious” when the drugs were allegedly administered:

“the patients were awake and conscious moments before the drugs were administered.” So, it would have been ok to kill them if they were unconscious…?

That’s a good question, as is the one she asks about the last line of the article, which says “Euthanasia is considered a crime in Brazil.”  I don’t think I could improve on Meghan’s response to that:

Uh…so…if euthanasia had been legal, the doctor’s actions would have been ok? Why the need to differentiate this kind of murder from any other kind of cold blooded murder?

We should be grateful that – at least for the moment – no one is calling the alleged murders “mercy killings.”  Research on serial killings in medical facilities indicates that the killers have much darker motives than “compassion,” a trait not common among serial killers.

 

Minnesota: Some Charges Against Final Exit Members Thrown Out, Two Defendants and Serious Charges Remain

courts, crime and punishment, final exit network, Frontline, Jerry Dincin, lawrence egbert, Minnesota, Our News & Commentary Blog

It’s been awhile since we’ve written about the Final Exit Network (FEN), but there are new developments in the criminal case against members of the group.  You can read earlier posts on the case in Minnesota here, here, here and here.

Here’s an excerpt from a summary on NPR on the Frontline site (Frontline producers are big fans of FEN):

A Minnesota judge has ruled that part of the state’s law against assisted suicide is unconstitutional, in a ruling that could bolster right-to-die advocates’ efforts to overturn it.

Judge Karen Asphaug made the decision in striking charges on March 22 against Thomas Goodwin, the former head of the Final Exit Network, a right-to-die group that has been accused of illegally assisting in the death of a 57-year-old woman suffering from chronic pain.

It’s a felony in Minnesota to intentionally “assist, advise or encourage” suicide. Asphaug ruled that “advising” infringed on Goodwin’s right to free speech, since there was no evidence to directly implicate him in the woman’s death, and was therefore unconstitutional. The judge also struck down an assisted suicide charge and a charge for interfering with a death scene against one member, Roberta Massey.

There are still serious charges against the two remaining defendants:

The Final Exit Network and the two remaining defendants still face serious charges:

  • Lawrence Egbert, 84, who worked as Final Exit Network’s medical director, reviewed applications from people wishing to end their lives. Prosecutors say Egbert flew to Minnesota the day Dunn died. Egbert has been charged with two felony counts of assisting in a suicide, and two misdemeanors counts of interfering with a death scene.
  • Roberta Massey, 66, was a case coordinator, prosecutors say, and had contact with Dunn on the phone. One count of assisting with a suicide and another of interfering with a death scene was dropped against her last week, but she still faces one felony count of aiding others to assist in a suicide.

A third defendant in the case, Jerry Dincin, faced the same charges as Egbert. Today, the network announced that he had died of cancer, at age 82.

If they can establish that Egbert was at the suicide, things could get really interesting, in terms of FEN’s claims of never providing assistance or material.  If that’s established, some public comments of Egbert’s in other venues could become relevant.  Here’s an excerpt from a post last May that discusses some of the challenges Egbert could face in the courtroom:

The reporter is pretty careful in most cases in this story to qualify statements about FEN practices with wording such as “the website states.”

That’s important because not all of what the FEN website claims is true. Take this, for example, from the latest article:

A Final Exit Medical Committee reviews information, and if approved, an “Exit Guide” is assigned who provides detailed information how a person may purchase equipment and take steps to end their own life, according to the website.“The Network never supplies equipment,” the website states.That right there – about FEN never supplying equipment.  It’s not true.  How do we know?  The overly-modest and zealous Dr. Larry Egbert told us so, in an interview that appeared in the Washington Post in January:

Egbert tells me that years ago he asked someone who was about to “exit” if he could reuse the hood to save future patients the cost of buying a new one. The patient was delighted with the idea, Egbert says. He started asking everyone.The hood in my bare hands feels slightly slick. So, this one, the one I’m holding, has been used to end someone’s life? I ask. Egbert tells me it has surely been used at least once, and maybe several times, and the same could be said for most of the other 17 hoods in the garbage bag. 

So, Egbert, by his own admission, has provided equipment on a regular basis in his work as an ‘exit guide.’  That might seem like a minor point to some in and of itself, but the fact is, there is no way for us – the public – to verify any claim FEN makes.  It’s only when someone like Egbert gets to talking and bragging we get to hear some facts that depart from the established script.

We’ll wait and see what happens when they go to trial.

From Stephen Mendelsohn: More Media, Etc. From Connecticut Hearings on Assisted Suicide

assisted suicide, Connecticut, disability activists, disability rights advocates, legislation, media coverage, Our News & Commentary Blog, Second Thoughts

Stephen Mendelsohn, a disability activist and advocate with Second Thoughts Connecticut, sent this long list of media and some commentary.  I’m very grateful for this and this really deserves a post of its own.  Everything below was compiled and written by Stephen Mendelsohn – we’re all thankful to him for all his work and his testimony (see below) at the Hearing:

 

CT Mirror: http://www.ctmirror.org/story/19490/end-life-bill-brings-comfort-some-fears-vulnerability-others Fair and balanced, yet the comparison Arielle Levin Becker makes between Sara Myers and Cathy Ludlum is highly revealing (note my comment below the story).

New Haven Register (my heads-up e-mailing got us this one, after an earlier story falsely claimed that HB 6645 was full of safeguards): http://nhregister.com/articles/2013/03/19/news/doc51491e71b3e4e463179788.txt  HB 6645 as currently written has no waiting period and only one doctor if the “terminal illness” is deemed “sufficiently advanced,” meaning that someone can get a terminal diagnosis, pick up the lethal medication, and be dead within hours.

WTNH-TV Channel 8: http://www.wtnh.com/dpp/news/politics/weighing-in-on-assisted-suicide#.UVAfWDcsDRp

CT News Junkie: http://www.ctnewsjunkie.com/ctnj.php/archives/entry/right-to-die_or_assisted_suicide/

Picture from Second Thoughts Connecticut press conference, on the website of Senator Joe Markley: http://farm9.static.flickr.com/8509/8574564003_4797be77d7_b.jpg (I am standing on the left, and next to Cathy in the second video above) (Editor – Stephen Mendelsohn on left and next to Cathy Ludlum in the second video above)

Testimony on the bill: http://www.cga.ct.gov/asp/menu/CommDocTmyBillAllComm.asp?bill=HB-06645&doc_year=2013

Video of 15-hour hearing: http://www.ctn.state.ct.us/CTNplayer.asp?odID=8816 John Kelly’s excellent testimony is at just past clip position 2:00; Professor Stephen Mikochik (must see) followed by Claude Holcomb at 5:22; Stephen Mendelsohn at roughly 11:48

Disability Activists Testify, Bear Witness and Sing About Opposing Connecticut Assisted Suicide Bill

assisted suicide, Connecticut, disability activists, john kelly, legislation, Our News & Commentary Blog, Second Thoughts

Last week was a significant one in Connecticut.  On March 20, the Public Health Committee of the Connecticut legislature held a hearing on H.B. 6645, which would legalize assisted suicide in that state.  NDY board member and Director of Second Thoughts Massachusetts John Kelly testified in opposition to the bill.  Here’s a link to the press release that gives more info on the hearing and Kelly’s testimony.

In addition to Kelly, other disability activists were on hand, as evidenced in the links, videos, and pictures below:

Connecticut Post: General Assembly mulls state-sanctioned suicide:

HARTFORD — The General Assembly is considering the difficult question of whether a dying person should be allowed to legally take his or her own life with the help of a doctor.

The Legislature’s Public Health Committee on Wednesday listened to hours of testimony — mostly in opposition — to a bill that would allow physician-assisted suicide for terminally ill patients.

“This is a ticket to murder,” said John Kelly, director of Second Thoughts, a Massachusetts group that last year helped defeat a similar law in the Bay State.

“This amounts to a government recommendation that sometimes death is the best answer. Doctors make mistakes. Under this bill, a diagnosis can become deadly,” Kelly said.

Hartford Courant Picture Gallery – Pictures of John Kelly, Claude Holcomb and Meg McDermott included in the gallery – all from the disability community.

Elaine Kolb singing, playing guitar and talking; Connecticut disability activist Cathy Ludlum to her right.

My thanks to everyone who worked so hard to be there to let the legislature hear about our opposition to the bill. My apologies for taking this long to put up a blog post about it. If anyone has other links, wants to give names to some of the other people in the videos, etc. – please just write me and I’ll edit the additional info in.